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Review for National Urea Cycle Disorders Foundation, Pasadena, CA, USA

Rating: 5 stars  

Our son, Anders, was born a healthy baby boy on 11/2/2010. 36 hours in to his new life, he took a turn for the worst. We were rushed to two different hospitals trying to determine what was wrong with our newborn baby. We finally the confirmation that he did have a urea cycle disorder, which meant absolutely nothing to us, but at least we knew the cause of his ammonia levels of 855 & his comatose state. Through all of this confusion, I'm not sure who, but someone gave us Cindy Le Mons's (president of the National Urea Cycle Disorder Foundation, number. What a relief and savior that had been, finally getting in touch with someone who could give us answers. Unfortunately, Anders only lived 18 short days, but during those chaotic, stressful days, we had someone on our side who had walked in our same shoes. Cindy has been a blessing in so many ways, we cannot even begin to express how much. Anders ended up having OTC and we knew without a doubt we would not go through this sad, painful process again with having another baby, whatever we had to do to not face this for us or another child, we were willing to do. In vitro fertilization was the answer and all we needed was Anders' molecular diagnosis. Luck was not on our side, as no mutation in his DNA was ever found. At this point, I had no idea if I was even a carrier or if his had been a spontaneous mutation with our baby. Even my genectist thought we were at a loss, but not Cindy, she urged us to do a urine test to determine my probable carrier status and low and behold, it was positive! One of the best resources is a support group through NUCDF that encompasses many of us mothers who lost our newborn children to these dreadful diseases. Through that group, I have met people who have shared so much insight & wisdom, including much information on IVF PGD. Due to meeting some of these women, Cindy and their resources, I have realized that there is hope at the end of the tunnel for us and we still are able to have a child of our own with IVF PGD and without OTC! Although it is almost certain that we will have a healthy, OTC free baby, we will still be in close contact with this foundation with testing once we hopefully have another baby to double check the OTC was blocked through the PGD. I am a carrier but also have partial OTC myself, and Cindy has been a tremendous help with advice and knowledge on keeping myself as healthy as possible, especially during pregnancy.
Like I said, there are not enough words in the English language to say enough wonderful things about NUCDF and Cindy! She is one of a kind and as unlucky we may have been in the last several months, we are that lucky to have met Cindy!

I've personally experienced the results of this organization in...

Ongoing support and resources

If I had to make changes to this organization, I would...

Move them closer to us, in Florida!

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How do you feel you were treated by this organization?

Very Well

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Role:  Client Served & Lost a baby boy to OTC deficiency.